What are your PAVM symptoms?

Hi all, I just want to know a little about everyone’s PAVM symptoms as I’m not sure about mine.
Can’t breathe deeply ( shortness of breath) even SpO2 is good.
Fast heart rate
I had this symptoms for a long time now, my PAVM was coiled a month ago but I still have the symptoms. Felt very fatigued for the first few days right after the procedure.
Please let me know about your PAVM since I don’t know anyone that has one.
Thank you for reading.



Welcome to AVM survivors! Thank you for posting your question. I saw your entry against a couple of other conversations but we have very few @PulmonaryHeartHHT members, so the conversations you found are very old – like 4 or 5 years ago. Starting your own conversation is good.

We do have some current PAVM members who I hope will see this conversation and be able to share some experience with you.


Very best wishes,


1 Like

Hi, I didn’t realize those posts were that old. Thank you for letting me know. I hope people can see my question and put their input.
Thank you Richard.

Yes, your post above is public. The dates are very subtle. July 17 would indicate 17th July this year but July '17 (with the apostrophe) indicates July 2017. The system should prompt you if you are restarting an old conversation and ask if you are sure but the date notation is very easy to mix up. I hope you do get some PAVM people write back.

Hi, oxygen saturation 90, constant fatigue, breathlessness, headaches, aura without migraine- ongoing for years.
It’s pretty exhausting but hopefully my upcoming embolization procedure will improve matters :woman_shrugging::woman_shrugging::woman_shrugging:
Wishing you all the best,

1 Like

My wife has the Pulmonary Arterialvenous Malformations, mostly in her lungs. She’s in her 40s, and has had this since she was 8.
She has probably had around 100 surgeries, including open heart surgery and a lobectomy of her top left part of the lung.
As we’ve aged things haven’t been going so well. When she’s sitting, her o2 level hovers around 79-83. She had another blood gas test, and still has two inoperable AVMs that mayo can’t do
She’s a fighter though.

1 Like